I spent 2013 documenting a remarkable story. The Papiers are a beautiful family living an unimaginably difficult life as their young son, Dillon, is battling a very rare genetic disorder called Niemann-Pick Disease Type C. He is enrolled in a clinical trial at the National Institutes of Health where everyone is waiting to see if the experimental drug Cyclodextrin will save his life.
My full personal edit can be found on my website.
The Wall Street Journal’s extended color photo essay can be seen here.
Here is the incredible story by the brilliant Amy Marcus, featuring video by the very cool and talented Evan Simon.
www.dillonsfight.org is a great place to visit to learn more about the Dillon and the Papier family and donate to the cause.
Major thanks to the photo staff of the Wall Street Journal for the opportunity to enter this family’s life and share their story with my pictures. Also, I cannot thank Dillon and his parents enough for allowing us to be with them during some of the most difficult and intimate times in their lives last year. I mean it when I say, it was a privilege.